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1.  Evaluation of a web-based asthma self-management system: a randomised controlled pilot trial 
Asthma is the most common chronic condition of childhood and disproportionately affects inner-city minority children. Low rates of asthma preventer medication adherence is a major contributor to poor asthma control in these patients. Web-based methods have potential to improve patient knowledge and medication adherence by providing interactive patient education, monitoring of symptoms and medication use, and by facilitation of communication and teamwork among patients and health care providers. Few studies have evaluated web-based asthma support environments using all of these potentially beneficial interventions. The multidimensional website created for this study, BostonBreathes, was designed to intervene on multiple levels, and was evaluated in a pilot trial.
An interactive, engaging website for children with asthma was developed to promote adherence to asthma medications, provide a platform for teamwork between caregivers and patients, and to provide primary care providers with up-to-date symptom information and data on medication use. Fifty-eight (58) children primarily from inner city Boston with persistent-level asthma were randomised to either usual care or use of BostonBreathes. Subjects completed asthma education activities, and reported their symptoms and medication use. Primary care providers used a separate interface to monitor their patients’ website use, their reported symptoms and medication use, and were able to communicate online via a discussion board with their patients and with an asthma specialist.
After 6-months, reported wheezing improved significantly in both intervention and control groups, and there were significant improvements in the intervention group only in night-time awakening and parental loss of sleep, but there were no significant differences between intervention and control groups in these measures. Emergency room or acute visits to a physician for asthma did not significantly change in either group. Among the subgroup of subjects with low controller medication adherence at baseline, adherence improved significantly only in the intervention group. Knowledge of the purpose of controller medicine increased significantly in the intervention group, a statistically significant improvement over the control group.
This pilot study suggests that a multidimensional web-based educational, monitoring, and communication platform may have positive influences on pediatric patients’ asthma-related knowledge and use of asthma preventer medications.
PMCID: PMC4355974  PMID: 25885418
2.  Weight Loss Surgery Eligibility According to Various BMI Criteria Among Adolescents 
Obesity (Silver Spring, Md.)  2008;17(1):150-155.
A BMI cutoff point at the 99th percentile for age and gender or at 40 kg/m2 has been suggested for more aggressive treatment of adolescent obesity. The main objective of this study was to determine the proportion of adolescents eligible for weight loss surgery (WLS) based on various BMI cutoff points. Data was extracted from the electronic medical record database of an urban pediatric ambulatory care center over 4 years. National data were used to calculate BMI percentiles (Centers for Disease Control and Prevention (CDC), 2000). Eligibility for WLS was based on a BMI percentile criterion (≥Cthe adult WLS cutoff point (≥40 kg/m2). The sample consisted of 3,220 adolescents aged 12–17.9 years, of which 53% were female, 55% were of black race, and 17% of Hispanic ethnicity. Overall, 88 (3%) adolescents had a BMI ≥40 kg/m2 and 236 (7%) had a BMI ≥99th percentile (P < 0.001). All adolescents with BMI ≥40 kg/m2 had a BMI ≥99th percentile. A total of 159/2,007 (8%) of 12–14.9-year olds had a BMI ≥99th percentile compared with 77/1,213 (6%) 15–17.9-year olds (P = 0.10), whereas 43/2,007 (2%) of 12–14.9-year olds had a BMI ≥40 kg/m2 compared with 45/1,213 (4%) 15–17.9-year olds (P = 0.003). In summary, a relatively large proportion of adolescents from a diverse urban population would qualify for WLS based on the percentile criterion. Fewer adolescents would be eligible based on the adult WLS criterion, and younger adolescents would be less likely to be eligible for WLS than older adolescents.
PMCID: PMC4144199  PMID: 19008870
3.  A Pilot Study Identifying Statin Non-adherence With Visit-to-visit Variability of Low Density Lipoprotein-Cholesterol 
The American journal of cardiology  2013;111(10):1437-1442.
Non-adherence to cardiovascular medications such as statins is a common, important problem. Clinicians currently rely on intuition to identify medication non-adherence. The visit-to-visit variability (VVV) of LDL-C may represent an opportunity to identify statin non-adherence with greater accuracy. We examined the clinical and pharmacy data from 782 members of the Boston Medical Center (BMC) Health Plan, seen at either BMC or its affiliated Community Health Centers, who were taking statins and had at least 3 LDL-C measurements between 2008 and 2011. The LDL-C VVV (defined by the within-patient standard deviation) was categorized into quintiles. Multivariable logistic regression models were generated with statin non-adherence (defined by the standard 80% pharmacy refill based medication possession ratio threshold) as the dependent variable. The proportion of statin non-adherence increased across quintiles of LDL-C VVV (64.3%, 71.2%, 89.2%, 92.3%, 91.7%). Higher quintiles of LDL-C VVV had a strong positive association with statin non-adherence with an adjusted odds ratio of 3.4 (CI: 1.7–7.1) in the highest versus lowest quintile of LDL-C VVV. The age and gender adjusted model had poor discrimination [C-statistic 0.62 (CI: 0.57, 0.67)] while the final adjusted (age, gender, race, mean LDL-C) model demonstrated good discrimination [C-statistic 0.75 (CI: 0.71, 0.79)] between adherent and non-adherent patients. In conclusion, the VVV of LDL-C demonstrated a strong association with statin non-adherence in a clinic setting. Further, a VVV- of LDL-C based model has good discrimination characteristics for statin non-adherence. Research is needed to validate and generalize these findings to other populations and biomarkers.
PMCID: PMC3644321  PMID: 23433758
Visit-to-visit variability; statins; medication adherence
4.  Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS): Architecture 
We describe the architecture of the Patient Centered Outcomes Research Institute (PCORI) funded Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS, clinical data research network, which leverages the $48 billion dollar federal investment in health information technology (IT) to enable a queryable semantic data model across 10 health systems covering more than 8 million patients, plugging universally into the point of care, generating evidence and discovery, and thereby enabling clinician and patient participation in research during the patient encounter. Central to the success of SCILHS is development of innovative ‘apps’ to improve PCOR research methods and capacitate point of care functions such as consent, enrollment, randomization, and outreach for patient-reported outcomes. SCILHS adapts and extends an existing national research network formed on an advanced IT infrastructure built with open source, free, modular components.
PMCID: PMC4078286  PMID: 24821734
Electronic Health Record; Learning Health System; Clinical Trials; Patient Engagement; Distributed Computing
5.  Assessing parental self-efficacy for obesity prevention related behaviors 
Reliable, valid and theoretically consistent measures that assess a parent’s self-efficacy for helping a child with obesity prevention behaviors are lacking.
To develop measures of parental self-efficacy for four behaviors: 1) helping their child get at least 60 minutes of moderate intensity physical activity every day, 2) helping one’s child consume five servings of fruits and vegetables each day, 3) limiting sugary drinks to once a week, and 4) limiting consumption of fruit juice to 6 ounces every day.
Sequential methods of scale development were used. An item pool was generated based on theory and qualitative interviews, and reviewed by content experts. Scales were administered to parents or legal guardians of children 4–10 years old. The item pool was reduced using principal component analysis. Confirmatory factor analysis tested the resulting models in a separate sample.
304 parents, majority were women (88%), low-income (61%) and single parents (61%). Ethnic distribution was 40% Black and 37% white.
All scales had excellent fit indices: Comparative fit index > .98 and chi-squares (Pediatrics 120 Suppl 4:S229-253, 2007) = .85 – 7.82. Alphas and one-week test-retest ICC’s were ≥ .80. Significant correlations between self-efficacy scale scores and their corresponding behaviors ranged from .13-.29 (all p < .03).
We developed four, four-item self-efficacy scales with excellent psychometric properties and construct validity using diverse samples of parents.
Trial registration
Clinical trial registration: NCT01768533.
PMCID: PMC4004451  PMID: 24750693
Obesity prevention; Self-efficacy; Scale development; Pediatric primary care; Parents
6.  Correlates of Human Papillomavirus Vaccination Rates in Low-Income, Minority Adolescents: A Multicenter Study 
Journal of Women's Health  2012;21(8):813-820.
Low rates of human papillomavirus (HPV) vaccination in low-income, minority adolescents may exacerbate racial disparities in cervical cancer incidence.
Using electronic medical record data and chart abstraction, we examined correlates of HPV vaccine series initiation and completion among 7702 low-income and minority adolescents aged 11–21 receiving primary care at one of seven medical centers between May 1, 2007, and June 30, 2009. Our population included 61% African Americans, 13% Caucasians, 15% Latinas, and 11% other races; 90% receive public insurance (e.g., Medicaid). We used logistic regression to estimate the associations between vaccine initiation and completion and age, race/ethnicity, number of contacts with the healthcare system, provider documentation, and clinical site of care.
Of the 41% of adolescent girls who initiated HPV vaccination, 20% completed the series. A higher proportion of girls aged 11–<13 (46%) and 13–<18 (47%) initiated vaccination than those aged 18–21 (28%). In adjusted analyses, receipt of other recommended adolescent vaccines was associated with vaccine initiation, and increased contact with the medical system was associated with both initiation and completion of the series. Conversely, provider failure to document risky health behaviors predicted nonvaccination. Manual review of a subset of unvaccinated patients' charts revealed no documentation of vaccine discussions in 67% of cases.
Fewer than half of low-income and minority adolescents receiving health maintenance services initiated HPV vaccination, and only 20% completed the series. Provider failure to discuss vaccination with their patients appears to be an important contributor to nonvaccination. Future research should focus on improving both initiation and completion of HPV vaccination in high-risk adolescents.
PMCID: PMC3411349  PMID: 22860770
7.  Distributed Health Outcome Monitoring and Evaluation Using i2b2  
There is a pressing need for better tools to support comparative effectiveness research (CER) on a national scale. In addition, little is known about within-class outcome disparities for commonly used cardiovascular and diabetes medications. In this presentation, we will describe our experience implementing a new i2b2 cell, the Health Outcome Monitoring and Evaluation Cell (HOME), at 5 collaborating Clinical Translational Science Award sites (CTSAs) in the U.S. We will also describe the motivations to developing a common query framework, and findings related to the implementation and use of the HOME cell, to perform distributed CER queries. Our focus is on the assessment of race, gender, and location-based disparities in outcomes for patients treated with similar mediations for hypertension, dyslipidemias, and diabetes.
PMCID: PMC3845782  PMID: 24303227
9.  Enabling Hierarchical View of RxNorm with NDF-RT Drug Classes 
NDF-RT is the proposed source of drug classification information. We set out to construct a hierarchy of NDF-RT drug classes and RxNorm medications and evaluate it on medication records data. NDF-RT and RxNorm are distributed in different file formats, require different tools to manipulate and linking the two into a hierarchy is a non-trivial exercise. Medication data in RxNorm from two institutions was constrained by the hierarchy. Only 37% of records from one and 65% from another institution were accessible. We subsequently enriched the RxNorm mapping in NDF-RT by exploiting relationships between concepts for branded and generic drugs. Coverage improved dramatically to 93% for both institutions. To improve usability of the resulting hierarchy, we grouped clinical drugs by corresponding clinical drug form.
PMCID: PMC3041416  PMID: 21347044
10.  Quality indicators and quality assessment in child health 
Archives of disease in childhood  2009;94(6):458-463.
Quality indicators are systematically developed statements that can be used to assess the appropriateness of specific healthcare decisions, services and outcomes. In this review, we highlight the range and type of indicators that have been developed for children in the UK and US by prominent governmental agencies and private organizations. We also classify these indicators in an effort to identify areas of child health that may lack quality measurement activity. We review the current state of health information technology in both countries since these systems are vital to quality efforts. Finally, we propose several recommendations to advance the quality indicator development agenda for children. The convergence of quality measurement and indicator development, a growing scientific evidence base and integrated information systems in healthcare may lead to substantial improvements for child health in the 21st century.
PMCID: PMC2774840  PMID: 19307196
Quality; Quality indicators; General pediatrics; Health information technology
11.  BostonBreathes: Improving pediatric asthma care with a home-based interactive website for patient education, monitoring, and clinical teamwork 
The BostonBreathes (BB) system is an interactive website enabling physician-physician and physician-patient communication, monitoring (peak-flow, medication use, symptoms) of asthma patients in the home, and patient and family asthma education. The system helps primary care physicians to function in team relationships with asthma specialists and nurses. Patients and families can interact with their health professionals online as members of the care team. BB uniquely combines patient education, monitoring, and clinical teamwork functions into one integrated web environment.
PMCID: PMC1839731  PMID: 17238763
13.  TLC-Asthma: An Integrated Information System for Patient-centered Monitoring, Case Management, and Point-of-Care Decision Support 
A great deal of successful work has been done in the area of EMR development, implementation, and evaluation. Less work has been done in the area of automated systems for patients. Efforts to link data at multiple levels – the patient, the case manager, and the clinician have been rudimentary to-date.
In this paper we present a model information system that integrates patient health information across multiple domains to support the monitoring and care of children with persistent asthma. The system has been developed for use in a multi-specialty group practice and includes three primary components: 1) a patient-centered telephone-linked communication system; 2) a web-based alert reporting and nurse case-management system; and 3) EMR-based provider communication to support clinical decision making at the point-of-care.
The system offers a model for a new level of connectivity for health information that supports customized monitoring, IT-enabled nurse case-managers, and the delivery of longitudinal data to clinicians to support the care of children with persistent asthma.
Systems like the one described are well -suited, perhaps essential, technologies for the care of children and adults with chronic conditions such as asthma.
PMCID: PMC1480156  PMID: 14728122

Results 1-13 (13)